bloody hell its March already!!

Where did January and February go? Come on I want to know who has been hiding them?

Thanks for your comments on my last post - they show up in my email and I read them and then I forget to publish them .... well I have lately.

Em - unfortunately been there done that with the fludrocortisone. Horrendous migraines and did sweet fanny Adam's to my blood pressure. I tried it from March 2011 (I think don't quote me!) until November 2011 at varying doses by the end I couldn't tolerate half a tablet. I tried taking it with pizotifen as well to see if that would stop the migraines and it just didn't work. Oh well you have to give these things a go until you find the right combination / solution.

Jess - Ive been off gabapentin for two days. Bit of a long story! Isn't it always with me! You are completely correct about gabapentin being contraindicated with MG. I took it to prove the MG connection - which as most of you know is still up for debate. Day two being off it and I feel like me again, I actually feel awake and alive instead of in a drug induced fog with absolutely no energy. I mean the kind of energy where by the end of the day you can't even follow a TV programme. I stopped taking it because on Friday at 230am I woke up with the most horrendous stomach pain / gall bladder pain. I belched continually for 45 minutes - not something any lady should admit to but hey Ive said far worse on here so what the hell! The pain was so bad I thought I was going to have to call an ambulance. It shot through to my back and under my right shoulder. I did the next best thing and took a handful of painkillers and googled! It wasn't dyspepsia as I'd already taken lansoprazole as I have a hiatus hernia (courtesy of EDS). Eventually around 2 hours later the morphine began to work but I felt awful. I knew there was a link with gabapentin and gall bladder / pancreatitis so decided not to take it. I am lucky that I have that option - not being epileptic. Today I am awake and feel alive, I don't feel confused, I feel like theres some gas in the tank, for the first time since Ive taken it. I'm ringing the Dr tomorrow to tell him I won't be taking it anymore. The side effects are just too much. The gall bladder is still a little achy and when prodded makes me squeal but I'm not unduly worried. Between me and you (the readers) I fell of the diet waggon big time last night with no ill effects!

Hubby is as far as I know being a saint on the diet front! Well if he is cheating its not showing on the scales hes now just a pound away from 2stone! I'm stuck at a 12lb loss - less said the better last night was not the only time the falling off has happened!

So I thought I would give you a quick update and let you know I'm ok. Thanks for the comments and hopefully now I am off the gabapentin I can remember to publish them!

I'm heading for a crash....

In January I had a good few weeks and managed to get lots of jobs done that had been bugging me for weeks. I actually felt the best I had in a long time. However things have slowly been changing. I noticed I have been becoming more tired, sleeping 11-12 hours a night, having very bad spinal pain and a feeling of just not being right. Nothing I could really put my finger on. Just the feeling something wasn't right.

I am constantly dehydrated no matter how much I drink and I drink a lot (4-6lts). I know when I am dehydrated as my fingers crinkle like I have been in the bath for an hour. When there is enough fluid on board my hands are normal. People ask me how can I drink that amount of fluid in 24 hours - its really bloody easy I'm constantly thirsty. The problem is I'm just not hanging onto this fluid despite the salt tablets.

The good news is that now I am off the amiltyptiline my bladder doesn't seem to be as badly affected by midodrine. The bad news is that currently the midodrine isn't doing anything. My highest blood pressure reading this week has been 102/53 not exactly the results the Dr's and I were hoping for. The blood pooling in my legs is worse than ever.

I'm also getting a whole host of new symptoms such as really awful headaches around an hour after I have eaten. A sudden feeling of a really swimmy head when sitting down which takes a while to settle. Also my legs are buckling underneath me when I am standing. I nearly ended up wearing the kitchen worktop on my chin earlier today. None of these symptoms come with any warning they just happen. Its beginning to frighten me.

This slow decline has me worried I am managing to hide my fears from my husband - he really doesn't need the added stress. Mother knows because during two phone calls this week I have sounded drunk because I have felt so awful I could barely string two words together. Unfortunately one of the phone calls was at 7pm and hubs wouldn't be home until after 10pm. I couldn't move from the chair I was in and I just had to hope I didn't pass out. Hubs did ring me around 20mins after my mum had and on hearing how bad I was asked if I wanted him home. I said no, what could he do? What could anybody do? POTS is such a rare condition if I went to hospital I would be put in an observation ward and left until morning. Leaving me open to hospital based infections and taking up a bed for someone they could actually fix.

I know this post sounds depressing, I promise you I couldn't be further from depressed if I tried. I am concerned how bad is it going to get? As I really don't want to be admitted to hospital.

So If I am MIA for a while you will know why, I am hoping it doesn't come to that. However the signs aren't good. Even my early warning system Frankie is concerned.......never a good sign!

Thanks for reading xx